I'm getting frustrated and I don't know where to turn, nor how to word myself well on this topic. It's not so much an issue here, which is why I feel safe bringing it up. I know there is a larger % of neurodiversity within EDS population compared to general population, the study I read about most recently sited 6x as many, but still a pretty low % (under 10%). In my own family we have some with EDS and autism and some with only EDS. I am not autistic, nor do I have ADHD. I've been evaluated due to unrelated mental illness and I know with myself that I definitely do not fit a diagnosis of either. Unfortunately I find that any time I talk about any problem that sometimes can be found in autistic or adhd individuals, I get told I MUST have it and I'm in denial, ignorant or masking and not realising it. Or that I'm a bigot who hates neurodiversity and myself. None of this is correct, and it's becoming "gatekeeping". It's not allowed to say that you have EDS without autism or adhd. I am really really fed up at this. I want to be allowed in EDS spaces without being told by strangers that I have additional dx that I do not have, and then be made to feel awful when I say I don't. I also do not have POTS, even though it's common with EDS 🤷‍♀️ There is no research showing a 100% comorbidity with EDS and autism or adhd to my knowledge. If anyone knows of high quality peer reviewed studies showing this, please send it here. And for anyone who needs to hear it, you're okay. You're a valid zebra even if you don't fit the little box some people want to put you in. You can have EDS and none of the common comorbidities, or all of them - anything goes! And saying "I don't have xyz" is not the same as being in denial or ignorant. Nobody hears me saying "I hate straight people" when I say I am not straight. Or hate people of xyz country when I say where I'm from. There needs to be space for everyone, whether ND, NT or unsure.

Posted by Ida at 2023-05-15 14:49:15 UTC